Developmental delay and intellectual disability

Everyone with Dravet Syndrome has some degree of intellectual disability. As with other features of the condition, there’s a spectrum of severity. 

In Dravet Syndrome, intellectual development appears typical in the first year of life and when seizures first start. 

Over time, usually by two to three years old, a developmental delay becomes noticeable. As childhood progresses, development generally continues to be impaired – some early skills and abilities may be lost, and the comparative gaps with neurotypical peers will continue to widen.

Many children with Dravet Syndrome do make slow but regular developmental progress into their early teens. Nevertheless, by the time they reach adulthood, around 80% live with moderate to severe intellectual disability. 

It’s rare that any adults with Dravet Syndrome will be able to live independently. They will require full-time care and support for life. Over time, managing intellectual disability and other comorbidities can be as burdensome for caregivers as seizures (if not more so). This is why it's critical to recognise that Dravet Syndrome is more than seizures. Caregivers need and are entitled to support from the local authority. If a family in your care has not applied for a needs assessment or NHS continuing care (or its equivalents in Scotland, Wales and Northern Ireland), signpost to Dravet Syndrome UK for practical advice and guidance.

Remember - if an adult has an intellectual disability and complex epilepsy, it could be a sign of Dravet Syndrome. Consider referring for genetic testing and avoid the use of sodium channel blockers where possible.